Amidst the hullabaloo of social enterprises clambering to mount the bandwagon of the latest fad to make a quick commissioning buck in praise of ‘rights’, it’s easy to forget the actual importance of dementia advocacy services. I’ve long felt that the two biggest problems with ‘dementia friendly communities’ apart from the obvious concerns about ‘what is dementia?’ and ‘what is a community?’ is the concern that the dementia friendly communities and their powerful branding might be viewed as some cost neutral alternative to real local services, and the relationship between the State and the community remained poorly defined.
LBC presenter Shelagh Fogarty (@ShelaghFogarty) yesterday asked a question to her audience, ‘What do you think is important in a community?’ You might not miss the shutting of a local butchers if an out of town supermarket opens up closeby, but you might miss a legal aid centre if you need to query some claim such as in the personal independence payment.
There is a meme circulating on Twitter at the moment that this photograph of dogs sitting round the board room table represents the ‘decision making body’ of laws about healthcare of cats. This was supposed to mock Donald Trump’s latest defeat about healthcare in the US Congress. This reminded me of how global dementia policy is framed for the most part by people already with substantial power and influence who don’t actually live beyond a diagnosis of dementia nor are care partners.
The law can be an ass, and its problem is that it represents only source of rights; but within that, there are various often conflicting sources of rights. As an advocacy tool, to say you have rights is important. Just look at Rosa Parks.
Civil rights activist Rosa Parks refused to surrender her bus seat to a white passenger, spurring the Montgomery boycott and other efforts to end segregation.
But it is the case that the law (and, more precisely, the State) considers itself ‘within its rights’ to deprive you of your liberty, under certain circumstances. People beyond a diagnosis and care partners are crucially different in one aspect at least – they are not criminals, but coming to terms with a medical diagnosis. The issue comes when certain features quite unique to dementia, such as loss of decision-making capacity, can interfere with the State’s decision to deprive you of your liberty. And views differ. Like most law, there are nuanced arguments, but it is my contention that placard or shroud waving about rights is not enough at a local level for this, although it is strongly desirable to imbue an ethos of ‘rights activism’. In a world where experts are largely derided and not invited into the committee rooms of revolving-door celebrity attendees of dementia policy decision-making, I feel it is rather important to understand where some of the problems have come from.
Centrally, the law domestically for us, the Mental Capacity Act, gives basic tenets relating to mental capacity. The MCA says (and this comes verbatim from the NHS Choices website):
- Everyone has the right to make his or her own decisions. Health and care professionals should always assume an individual has the capacity to make a decision themselves, unless it is proved otherwise through a capacity assessment.
- Individuals must be given help to make a decision themselves. This might include, for example, providing the person with information in a format that is easier for them to understand.
- Just because someone makes what those caring for them consider to be an “unwise” decision, they should not be treated as lacking the capacity to make that decision. Everyone has the right to make their own life choices, where they have the capacity to do so.
- Where someone is judged not to have the capacity to make a specific decision (following a capacity assessment), that decision can be taken for them, but it must be in their best interests.
- Treatment and care provided to someone who lacks capacity should be the least restrictive of their basic rights and freedoms possible, while still providing the required treatment and care.
I’ve already provided a description of the rudiments of mental capacity law (and best interests) in my first book on dementia ‘Living well with dementia: the importance of the person and the environment” (CRC Press, 2014).
The Law Commission in their recent pamphlet (No 372) entitled “Mental Capacity and Deprivation of Liberty”, I felt, set out rather neatly the various problems with this area highly relevant to people living with dementia.
And this sentence from the pamphlet is striking, particularly when you consider the annihilation of dementia advocacy services which accompanied the David Cameron Dementia Challenge:
“It is not acceptable to continue with the current system where many people’s rights have become theoretical and illusory.”
The law has to be enforceable at all times, and yet the current situation of deprivation of liberty safeguards (DoLS) is not good. The official figures also show an increasing number of DoLS referrals being left unassessed and statutory time-scales being routinely breached; in England, only 43% of the 195,840 DoLS cases referred to local authorities for during 2015-16 were completed during the year, and of those only 29% were completed within the 21-day time limit set in regulations.
I should like to quote a case study from this pamphlet verbatim, under the conditions of the Open Government license, which shows for me how it is so essential to get this right for every individual involved. This concerns the case of London Borough of Hillingdon v Neary (Hillingdon LB v Neary  EWHC 1377 (COP),  4 All ER 584).
“Stephen Neary was a young man with autism and learning disabilities. He lived at home with his father, with high levels of support services funded by Hillingdon Council. Steven lacked capacity to decide where or with whom he should live. In December 2009, his father reported to social workers that he was having difficulties coping. The local authority arranged for Steven to stay in a residential support unit. However, staff found Steven’s behaviour very challenging, particularly around food, and were concerned about him returning home. His father wanted him to stay for a couple of days but agreed to an extension of a couple of weeks in the expectation that Steven would then return home. In fact, the local authority kept Steven at the facility for a year, including a period when he was subject to the DoLS regime. The Court of Protection held that Steven had been unlawfully detained and ordered that he must return home to live with his father. The court noted, in particular, that the local authority did not properly discuss its concerns or its plans with Steven’s father, and that Steven expressed a desire to return home. The decision-making processes of the local authority were criticised by the court.”
As it stands, the DoLS are contained in schedules A1 and 1A to the Mental Capacity Act, added by the Mental Health Act 2007. The DoLS aim to ensure that adults who lack capacity to consent to being accommodated in a hospital or care home for the purpose of being given care and treatment are only deprived of liberty if it is considered to be in their best interests. In simple terms, the DoLS do this by establishing an administrative process for authorising a deprivation of liberty and a means to challenge any such deprivation. The DoLS apply to all hospitals (including general hospitals and psychiatric hospitals) and care homes (including private care homes). They do not extend to deprivations of liberty in supported living, shared lives, and private and domestic settings. The DoLS provide that a hospital or care home (referred to in the legislation as the “managing authority”) must apply to the “supervisory body” for authorisation of a deprivation of liberty on their premises.
There are other problems, other than the sheer volume of cases. Many feel the DoLS exhibit a strange disconnect with the Mental Capacity Act: the Law Commission comment, “the DoLS are seen as incompatible with the style and empowering ethos of the Mental Capacity Act, to which they are attached. The two are often regarded as separate legislation with different legal and philosophical histories“.
There are a number of key recommendations made in the pamphlet, and these are worth noting as they will apply to some people living with dementia:
- The DoLS should be replaced as a matter of pressing urgency.
- The Liberty Protection Safeguards should be accompanied by the publication of a new Code of Practice which covers all aspects of the Mental Capacity Act.
- The Liberty Protection Safeguards should enable the authorisation of arrangements which are proposed (up to 28 days in advance), or are in place, to enable the care or treatment of a person which would give rise to a deprivation of that person’s liberty.
It is worth noting that this will still have to contend with international law, and at the time of me writing this the UK government has no intention of withdrawing from the European Convention of Human Rights (ECHR) despite the imminent triggering of Article 50, commencing the official Brexit process.
In Convention law, a major instrument governing human right, Article 5(1) of the ECHR provides that no-one shall be deprived of liberty unless the deprivation is carried out in accordance with a procedure prescribed by law and is necessary in a democratic society on one of a number of grounds (including, notably, “unsoundness of mind”). Article 5(4) provides that everyone deprived of their liberty is entitled to take proceedings by which the lawfulness of their detention shall be decided speedily by a court, and their release ordered if the detention is not lawful. In summary then, the underlying aim of Article 5 is to ensure that no one is deprived of liberty arbitrarily.
But this is not the only Convention right at play. Article 8(1) provides that “everyone has the right to respect for his private and family life, his home and his correspondence”. The right is qualified, and State interferences with the various aspects of the right are permitted where they are in accordance with the law and necessary in a democratic society in the interests of, for example, the protection of health. This is yet another example of where ‘dementia rights’ do not exist in a vacuum, and while placard waving for marketing purposes has a function, it cannot possibly convey the real issues in the actual activation of rights comprising realpolitik.
I believe therefore in ‘dementia activism’, therefore, there should be practical operation of campaigning for rights. It is true that human rights are universal and inalienable, but also for people in England and Wales nobody is above the law (the ‘rule of law’). This is the practical heart of the issue, For example, on 19 March 2014, the Supreme Court handed down its judgment in “Cheshire West”. This was a conjoined appeal of two cases, P v Cheshire West and Chester Council and P and Q v Surrey County Council. I refer to this case in detail in my second book on dementia, published by Jessica Kingsley Publishers, “Living better with dementia: good practice and innovation for the future”.
Lady Hale, giving the leading judgment, held that human rights are the same for everyone: If it would be a deprivation of my liberty to be obliged to live in a particular place, subject to constant monitoring and control, only allowed out with close supervision, and unable to move away without permission even if such an opportunity became available, then it must also be a deprivation of the liberty of a disabled person. Indeed, many have been critical of the Supreme Court judgment in Cheshire West and
argued that it was wrong as a matter of law. I think the power of this controversial judgment, however, cannot be understated in the context of campaigning for ‘dementia rights’. In particular, the judgment undoubtedly “pushes to centre-stage the
understanding that human rights are universal and that what it means to be deprived of liberty must be the same for everyone, whether or not a person is disabled“, as indeed stated by the Law Commissioners.
Unfortunately, a recent draft of the new Welsh dementia strategy referred to the UN Convention on the Rights of the Child (see e.g. p.15), for reasons best known to them. However, the critical piece of legislation for anyone who has been following this for the last few years, pursuant to the excellent campaigning work of Prof Peter Mittler CBE and Kate Swaffer CEO of Dementia Alliance International is the UN Convention on the Rights of Persons with Disabilities, which was ratified by the United Kingdom in 2009.
This Convention’s purpose (UNCRPD) is to protect the rights of people who have long-term physical, mental, intellectual, or sensory impairments. Whilst not directly incorporated into our domestic law, it is applied both by the Strasbourg and domesticcourts as an aid to interpretation of the ECHR, including by Lady Hale in Cheshire West. The legal instrument is in my view pivotal in the analysis of Deprivation of Liberty Safeguards, and, if properly applied, could be a powerful legal weapon for people living beyond a diagnosis of dementia. However, its operation in England and Wales is affected by the decimation of law centres which came roughly at the same time as the David Cameron Dementia Challenge, and, while it is fantastic that social enterprises are now maximising value through the advocacy of rights, it is surely not to be forgotten that the stripping away of legal protection of people with dementia and carers has been a very real crisis following the Legal Aid and Sentencing and Punishment of Offenders Act (2012). The swingeing cuts to social care allied mental health professionals and others have been exasperating in contradistinction to the slick social media marketing of ‘I’m alright with rights’.
There are two articles in the UNCRPD which I think can be used to uphold the rights of people with dementia in the jurisdiction of England and Wales. Interpretation of these articles must take into account the parlous state of support legal advocacy systems for people with dementia and care partners. This might depend, in part, on recent legislation from the Care Act (2014) (see SCIE link).
The first is Article 14.
The guidelines on article 14 of the Convention on the Rights of Persons with Disabilities concerning the right to liberty and security of persons with disabilities state:
“6. There are still practices in which States parties allow for the deprivation of liberty on the grounds of actual or perceived impairment. In this regard the Committee has established that article 14 does not permit any exceptions whereby persons may be detained on the grounds of their actual or perceived impairment. However, legislation of several States parties, including mental health laws, still provide instances in which persons may be detained on the grounds of their actual or perceived impairment, provided there are other reasons for their detention, including that they are deemed dangerous to themselves or others. This practice is incompatible with article 14; it is discriminatory in nature and amounts to arbitrary deprivation of liberty.”
The second Article worthy of note is Article 12.
Article 12 of the UN Convention on the Rights of Persons with Disabilities provides that disabled people are entitled to legal capacity on an equal basis with others in all areas of life. Crucially, Article 12(3) obliges State Parties to provide access to the support that disabled people may require in exercising their legal capacity. Legal capacity is not actually defined in the Convention and interjurisdictional legal differences will exist, but it can be understood as the construct which gives our decisions and transactions legal significance, how we give effect to our preferences and choices in the real world. The significance of Article 12 lays in its demand that disabled people, including must enjoy legal capacity on an equal basis with others. Article 12 of the CRPD requires ‘equal recognition before the law’ for disabled people and Article 12(2) demands that State Parties recognise that disabled people ‘enjoy legal capacity on an equal basis with others in all areas of life’.
The key to this as indeed the Law Commission discusses is the notion of ‘supported decision-making”: viz,
“The main impetus for supported decision-making schemes has been the UN Convention on the Rights of Persons with Disabilities. In particular, Article 12 (the right of disabled people to enjoy legal capacity on an equal basis with others) has been interpreted by the UN Committee on the Rights of Persons with Disabilities as indicating that national laws should provide support to people with disabilities to ensure that their will and preferences are respected, rather than overruled by action which is considered to be in the person’s objective best interests.”
A danger, some argue, is that Article 12’s wording may permit the continuation of guardianship-style systems based on substituted decision-making, and the continuation of substituted decision-making models could potentially undermine the transformative potential of the entire Convention.
So the Law Commission fudge it a bit:
“We share the aim of ensuring that the person is supported so as to be able to exercise their legal capacity, including through making their own decisions, although, as noted above, we consider that there are some situations in which it may nonetheless be necessary and proper to overrule the ascertainable wishes and feelings of a person lacking the mental capacity to make a particular decision or decisions.”
This is very different from the soothing image of people holding up placards.
The upshot is that member states must provide the resources and infrastructure necessary to develop models of supported decision-making. If indeed the disability rights community can encourage State Parties to interpret Article 12 in a manner consistent with the aims of the CRPD then it has the potential to deliver real improvements for the lives of disabled people. Ideally, the Dementia Alliance International with the support of their partner organisation Alzheimer’s Disease International, in synergistic strategic alliance with the International Disability Alliance, can pool resources and competences with shared aims.
As the Law Commission note, precisely what the CRPD requires in relation to laws that deal with mental incapacity is still not entirely clear. They claim rather contentiously that there has even been some debate as to whether the Committee on the Rights of the Persons with Disabilities (the UN body which monitors implementation of the CRPD by States Parties) has sought to impose obligations that are not contained in the CRPD itself.
The Law Commission in summary propose the following to outline the potential incompatibility with Article 14 and with Article 5(1) ECHR.
“(1) The Liberty Protection Safeguards are unlikely to comply with Article 14 of the CRPD as interpreted by the UN Committee, which contends that any deprivation of liberty on the basis of a person’s actual or perceived impairment (even where there are other reasons, including their risk to themselves) amounts to unlawful deprivation of liberty.24 However, and as noted in the consultation paper, it is not on its face possible to comply with both Article 5(1)(e) of the ECHR and this interpretation of Article 14 of the CRPD. Moreover, we note that the underlying right to liberty contained in the International Covenant on Civil and Political Rights (which the CRPD is intended to ensure is enjoyed equally by all, regardless of disability) is interpreted in a manner much closer to Article 5(1)(e) by the UNHuman Rights Committee.
(2) Within the limits of our terms of reference, we have sought to draft legislation that is in the spirit of the CRPD. In particular, we have sought to ensure that wishes and feelings are given a particular weight in best interests decision-making by our recommended amendments to section 4 of the Mental Capacity Act. We havealso provided for a regulation-making power enabling a supported decision-making scheme to be implemented.”
The take home message is that it now looks as if the Dementia Alliance International, with their advisor Prof Peter Mittler CBE, were right all along in emphasising the importance of the UNCRPD. I would go a step further in arguing that the UNCRPD holds the key for lobbying of national governments to ‘up their game’ on national dementia advocacy services, far beyond the rhetoric of ‘dementia friendly communities’ and the ‘marketing of rights’.